Saturday, November 15, 2008

This is what Saturday's are about!

It's Beaver Football Saturday, Beaver Fans!! Get out your orange & black & hit the road - a 2 hour road trip south from our house, down to Corvallis OR, home of the Oregon State Beavers!

A quick trip to Starbucks for some goodies before we drop Charlotte off at Marmee & Poppa's. 3 years old is a hard age to enjoy a football game! But soon enough....Tailgating with Grandpa:


...and sometimes Uncle Tyler (who comes up from San Francisco). (Gotta get Uncle Tyler a new Beaver hat!)
Stand Up, Sit Down... FIGHT FIGHT FIGHT!Sometimes the Beavers can be exasperating!
Our view from our seats. Oregon State Beavers played the California Bears today!
Yikes, it was a nail biter up until the last few seconds!!

Final score: Oregon State Beavers 34 California Bears 21



Sunday, November 9, 2008

Turkey & Ears & Headbands, OH MY!

1. Turkey
I am getting organized for Thanksgiving. Not only the meal but the day itself becaues I love this day, I love the food, I love GOOD food & I love sitting & enjoying meaning of the meal! Last year, I went to Williams-Sonoma two Sunday's in a row to learn techniques on turkey making & with the help of their apple brine & compound butter, it came out moist & OH SO TASTY! And the classes were FREE!


My friend Krista Colvin, an organizing & lifestyle motivator, has come up with some REALLY great tips for me this year that I am totally incorporating into our day! See her ideas on our local morning show: http://www.katu.com/amnw/segments/33758474.html

2. Ears
sigh.... Starting around 5pm yesterday, Charlotte said, "Momma, my ear hurts! Can you get it out? Look in there, can you get it out?" Get it out? That's a new one. Now mind you, I first thought she might be hallucinating or going through some wierd concussion thing because 30 minutes prior to the ear talk, she got on her bike without any supervision and thought she would ride it DOWN the driveway. Yes, we have a slight incline in our driveway, so our girls are told to walk their bikes DOWN to the sidewalk & then start riding. I think this will be the last time Charlotte decides to coast downhill, because she picked up speed, went past the sidewalk, through the street (thank goodness we are on a deadend w/ only 17 houses in our neighborhood) & hit the neighbors driveway & went head over handlebars. A nice strawberry is on her forehead but that's IT, THANK GOD! Seriously..... oye vey! SO... back to the ears.


Charlotte is asking for "meddy" - so why not?! Here's some motrin. But like clockwork, about 6 hours later, it wore off (@ 11pm) and she was crying. Its the earache cry, you know the one of the whining (i think it gets its own category).... yep... so off to the Dr. today (love that they are open on the weekends) & now she's on some drugs for that & is now napping on my bed. Good news, she can still do her remicade treatment in 4 days. Learned lesson for mom & dad: She now tells us when she's in pain & can be very descriptive about it. And we are paying attention because of her story. I love the verbal's though, can I tell you!?
It's a new experience for us to have her be so descriptive in her pain...
3. Headbands
My supply is restocked with some CUTE, cute, cute new ribbons, flowers & bows! Oh my goodness there's some cuteness here with fresh, brand new looks. I really love the christmas bands & have even made some gold & silver ones that are especially glitzy! I think they can go all winter long! The all red ones are so cute & could be worn for every national holiday, Valentines & Christmas! This red ribbon is stitched in white which adds just a little something to it!

I have been invited to bring the bands to downtown Camas for "1st Friday" on December 5th from 3-9pm. I am so happy to be a part of a fun evening for families, celebrating the season & memory making!

I have got the etsy site UP & running. I struggle with it because inventory changes so fast because I dont like to make "20 animal print w/ black bow." I like unique, different, 2 here, maybe 3 here. Classic tone on tone, I do my best to keep those stocked. But the best way is to say, "Pink!" and then then I have about 15-20 options just in the pink department that I can snap pictures & send! What's your color? I can do that!

http://www.tottiespretties.etsy.com

Thursday, November 6, 2008

Arthritis in children gets ABC exposure

Our friend Jacob, is featured today on ABCNews. I call Jacob our friend but we have never met face to face. I found his blog written by his mom Joanne, when I was looking for uveitis information. Jacob sees Dr. Stephen Foster in Cambridge for his uveitis condition & that's when Joanne & I started conversing. Joanne has three boys, I have three girls. In Joanne's house, they are all about the mud & outdoors! AT our house, its all about the dolls & bows. Jacob is older than Charlotte & therefore is able to speak about his pain & Charlotte is trying to figure out who she is at age 3. But we both have children with arthritis & we have learned, consoled & shared with each other in our common world.




Before I even read this article tonight (about older children with arthritis not wanting to share with their peers), we were talking at the dinner table about something that triggered us to jokingly say to Charlotte, "Oh what because you have arthritis?!" And we all laughed (insinuating that she cant get away with things "just because" she has arthritis). Charlotte said, "I dont have arthritis." "You dont?" "Nope..." and then something else happened & she said, "Oh i DOOOO have arthritis!" I said, "Oh NOWWW you want to claim arthritis huh!?" She shook her head yes. Does she even know what we are talking about when we joke around?!



Hopefully her experience with this disease will be a non-issue since she has had it for as long as she can remember. I hope Charlotte is so ingrained about me sharing with others about her arthritis that she too will want to share & educate & talking about it will be a non-issue!
Children Suffer Arthritis in Silence
Children Keep Silent About Juvenile Rheumatoid Arthritis

By LARA SALAHIABC News Medical Unit

Nov. 6, 2008

Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.
At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.

Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway.

"Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."

Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.

The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.

But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.

Lying to Keep the Secret
Although some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated.

"Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."

Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends.

"Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.

Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."

In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.

Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis.

"Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."

Finding Someone to Tell
As debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.

But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him.

"Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."

Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.
While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment.

"Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."

Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition.

"Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."

Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her.

"With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."

While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child.

"In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."

Copyright © 2008 ABC News Internet Ventures

Wednesday, November 5, 2008

So let us summon a new spirit of patriotism; of service & responsibility where each of us resolves to pitch in & work harder & look after..each other.

From the Arthritis Foundation Chief Public Policy Administrator:
New Obama Administration

Last week, many of you contacted me to let us know you saw Presidential nominee Senator Barack Obama discuss on national television and on multiple networks the ravages of rheumatoid arthritis. (To view the arthritis vignette, click here and advance 7 ½ minutes: http://capwiz.com/arthritis/utr/1/HLULJKQVEP/AGNMJKQWEX/2592515241).
Through the heart breaking story of Larry and Juanita Stuart from Ohio, we are witness to this devastating disease and the challenges of accessing and paying for the necessary care to treat it.
The Arthritis Foundation cannot endorse any candidate for office but we can reach out to campaigns with information. Earlier this week, we sent the attached letter to now President-Elect Barack Obama. The Arthritis Foundation will be working with the new Administration, and with the new Congress, on policies and legislation that will expand access to comprehensive health care to include preventive care, self-management programs, surgical interventions, rehabilitation services, and prescription medications for people with arthritis. We must work together, and with other like-minded organizations, at improving the care for people with arthritis.
It truly was a watershed moment for people with arthritis to be featured on national television by a candidate running for our nation’s highest office. We plan on using this opportunity with President-Elect Obama and his new Administration to engage in substantive policy and advocacy work on behalf of the 46 million people, including nearly 300,000 children with arthritis.

Amy Melnick
Chief Public Policy Officer
Arthritis FoundationNational Office
2011 Pennsylvania Avenue, NW Suite 610Washington, DC 20006
Arthritis is the most common cause of disability in the United States.

Monday, November 3, 2008

Jingle Bell Run Kick-Off Party

It's November & we are officially into the season for the Arthritis Foundation JINGLE BELL RUN! The first Sunday of December in Downtown Portland, the children run a 1K & everyone is invited to run a 5K. This year they have an ugly sweater contest & a costume contest! (oh ya, you are thinking about that ugly sweater contest aren't you!? Mee too!!)

Charlotte is the grand marshal of this years Jingle Bell Run. Which is bitter sweet right? This is our one year anniversary. It was last year that we still in the dark about this disease, we just knew we were in it, so we gathered friends & formed TOTTIES TEAM. Awesome, amazing support, loving friends who braved the most AWFUL of conditions that day!!! Thank you Friends!
This year, we know more, she's been through more, however, I still talk to people about arthritis in children while crying. It makes me mad.... I cant stand what it has done to her, or what she has to put up with, what we as a family have had to deal with.... the scares, the learning, the medicines, the appointments and the rigmarole of raising young spirited children in the middle of all of it! Yes, the drugs are amazing & looking at it in a positive way, we are fortunate to be living in a day where we have the drugs to help Charlotte keep the arthritis from damaging her joints & eyes in a crippling way. We are thankful for the medical advances. And we will continue to rally to support MORE.... more advances, more research... more!

Yesterday, hundreds gathered at the NIKE world headquarters for the kick-off party for the Arthritis Foundation Jingle Bell Run. Ryan & I introduced Charlotte & I couldn't even start to tell her story without crying. I apologized & tried to continue to get our story across (it is our... it has affected the entire family since Charlotte is so young). I always blame my mother at those instances :) YES Marmee - its you coming through, still talking while crying :) And so I carried on. And you know who was amazing? Charlotte. She came to me after my talk, gave me a kiss & then spoke in the microphone, "Thank you!" I love her.

So we will continue the fight to keep her arthritis under control. And we will continue to meet new families who are just entering this world of childhood rheumatic diseases & share with them our heroes: The Kelly's of High School running across finish lines. The Marian's of college, having fun & utilizing their intelligence in engineering! The Bella's of grade school, finding the magical drug that FINALLY works & allows her to ride her bike & have the energy after school to play with her friends. Those are Charlotte's heroes. The girls before her with JRA who are keeping it controlled & not letting it control them.

For Charlotte & all the children with Rheumatic Diseases, we celebrate family & mobility & the season of giving & LOVE: We run the jingle bell run!

Would you like to join us & get your bells on?!

Come join TOTTIES TEAM!!


12/7/2008 8:00 am - 8:25 am Costume Contest and Awards ~ Costume contest for all participants. Awards will be given for Best Adult Costume and Best Youth Costume .

12/7/2008 8:30 am - 8:45 am - 1K Kid's Fun Run Start

12/7/2008 8:50 am - 8:55 am - 5K Run/Walk Start

Fees:
5K Run (Chip Timed): $25.00Includes Long Sleeve T-Shirt and Jingle Bells
5K Walk: $25.00Includes Long Sleeve T-Shirt and Jingle Bells
1K Kids Run: $10.00Includes Long Sleeve T-Shirt and Jingle Bells
5K Run - Kids 12 & under (not Chip Timed): $10.00Includes Long Sleeve T-Shirt & Jingle Bells
5K Walk - Kids 12 & under: $10.00Includes Long Sleeve T-Shirt and Jingle Bells

Saturday, November 1, 2008

Halloween '08

After the excitement of the CARRA Costume Ball.... the evening of Halloween wasnt such a big deal to Emma, Ellie & Charlotte. That was nice for us :) We spent the evening having dinner with friends & then going through their neighborhood. We are in a little bit of a chocolate coma today, everyong is a little tired, but I am taking the girls to the mall to see what Halloween goodies we can find on sale for NEXT year :)!!! its all about looking spiffy for the CARRA Costume Ball!!
The girls were a CAT, MOUSE & a LOVEBUG. The boys were Trailblazer Brandon Roy, Buzz Lightyear, a skeleton pirate & Indiana Jones.
Our little lovebug got worn out walking around the neighborhood & asked to be carried. When she was crossing the street at one point, she biffed it big time (no curbs, nothing, she just tripped over her own tired legs) & got a nice big fat lip & a little scraped nose. Poor little love bug ... would you like a chocolate bar??? :)